Sleep in Autism Helping Children (and their Parents) Get the Rest they Need

Transcription

1 Sleep in Autism Helping Children (and their Parents) Get the Rest they Need Beth A. Malow, M.D., M.S. Professor of Neurology and Pediatrics Burry Chair in Cognitive Childhood Development PI, Vanderbilt Autism Treatment Network Director, Vanderbilt Sleep Disorders Division

2 Disclosures I receive grant support from Neurim Pharmaceuticals I will discuss off-label uses of medications to promote sleep in children with autism spectrum disorders

3 Presentation Goals Identify the causes of sleep disturbance in children with ASDs Describe the treatment options available for sleep disturbance in children with ASDs

4 Have you seen this child? Alex is a 6-year-old boy with autism spectrum disorder (ASD). He takes hours to fall asleep. His parents state that he can t shut his brain down. He drinks Mountain Dew with dinner, and plays video games after dinner. He can t settle down to go to sleep and leaves his room repeatedly to find his parents. Once asleep, he awakens multiple times during the night. Sometimes he awakens his parents. Other times he wanders around the house, goes to the kitchen to eat, and falls asleep in a different room. It is nearly impossible to awaken Alex in the morning for school. His parents are exhausted and very overwhelmed. Alex s teacher describes him as being hyperactive and disruptive in class.

5 Sleep Disturbance in ASD Sleep disturbance is one of the most common concerns voiced by parents of children with autism. The sleep community has identified autism as a priority population for targeting interventions for sleep disorders. Poor sleep impacts on the child s health and daytime functioning, as well as the family unit. Sleep disorders are highly treatable. However, evidence-based standards of care for the surveillance, evaluation, and treatment of sleep disturbance in the ASD population are greatly needed.

6 Prevalence of Sleep Concerns in ASD Multiple studies have documented that parentally reported sleep concerns are prevalent in ASD Patzold, Richdale, Tonge (1998): 63% ASD (TD 23%) Krakowiak et al (2008): 53% ASD (DD 46%, TD 32%) Souders et al (2009): 66% ASD (TD 45%) For the most part, objective measures (polysomnography and actigraphy) have borne out these parent concerns. Sleep disturbances are highly prevalent across spectrum diagnoses (Asperger, PDD-NOS, autistic disorder) and cognitive levels (including children with normal/high IQs). Allik, 2006; Couturier, 2005; Goodlin-Jones, 2008; Hering, 1999; Honomichl, 2002; Malow, 2006; Patzold, 1998; Richdale, 1995 and 1999; Souders, 2009; Stores, 1998; Krakowiak, 2008; Wiggs, 2004; Williams, 2004

7 Sleep Concerns in ASD Parent-completed survey of 210 children, ages 2-16 years

8 What is the Most Prevalent Sleep Disorder in ASD? Studies using parentally-completed measures, actigraphy and/or polysomnography report insomnia repeated difficulty with sleep initiation, duration, consolidation, or quality that occurs despite age-appropriate time and opportunity for sleep and results in daytime functional impairment for the child and/or family (Mindell et al, 2006) Prolonged time to fall asleep Preference for delayed bedtime (older children) Bedtime resistance (younger children) Sleep anxiety Decreased sleep duration Increased arousals and awakenings Early morning wake time

9 Causes of Insomnia in ASD Biological: neurotransmitter abnormalities, including melatonin, possibly GABA and serotonin. Arousal dysregulation? Medical (GI) and Neurological (epilepsy) Psychiatric (anxiety, bipolar disorder, depression, obsessive compulsive or ADHD symptomatology) Medications (serotonin reuptake inhibitors, stimulants, some antiepileptic drugs) Other Sleep Disorders: obstructive sleep apnea, parasomnias, restless legs syndrome/periodic limb movement disorder (nutritional link to low iron in ASD) Behavioral: Children with ASD may have difficulty with emotional regulation, transitions, and understanding parental expectations regarding sleep. Parents may have difficulty effectively conveying these expectations given other priorities and stressors.

10 Biology of Sleep Disturbance and ASD: Arousal Dysregulation Arousal dysregulation (hyperarousal) may tie together several features of ASD (Mazurek, 2013) Anxiety Sensory over-responsivity Functional GI problems Insomnia? Dysregulation of the hypothalamic-pituitary-adrenal (HPA) axis occurs in both insomnia and ASD, in association with daytime stressors (Buckley, 2005 and Corbett, 2008 and 2009). Studies of autonomic function provide additional evidence for hyperarousal (elevated baseline heart rate; Kushki, 2013) Insomnia treatment studies designed to target hyperarousal provide an opportunity to measure biological markers of autonomic and HPA dysfunction

11 Biology of Sleep Disturbance and ASD: Melatonin Endogenous melatonin, produced by the pineal gland, promotes sleep and stabilizes circadian rhythms through actions on receptors of the SCN. (Pandi-Perumal, 2006) Apart from hypnotic and circadian properties, melatonin inhibits ACTH responses in the human adrenal gland. (Campino, 2011) Melatonin processing appears to be altered in ASD.

12 Biology of Sleep Disturbance and ASD: Melatonin Examine melatonin synthesis and degradation pathways with both biochemical and molecular approaches Goldman, 2014 Tordjman, 2005 Veatch, 2014

13 Daytime Consequences of Sleep Disturbance In typically developing children, sleep disturbance has been associated with ADHD symptomatology, with improvement with treatment (Chervin et al, 2002; Gottlieb et al, 2003). In ASD: Schreck et al, 2004: Short sleep duration was associated with greater autism symptoms Gabriels et al, 2005: Presence of sleep problems was associated with repetitive behaviors, although this effect appeared mediated by non-verbal IQ. Doo and Wing, 2006: Using the Parenting Stress Index- Short Form and the CSHQ, presence of sleep problems was associated with higher levels of parenting stress.

14 Biology of Sleep Disturbance and ASD: Emotional Regulation Sleep deprivation affects the neural circuitry underlying emotional regulation, including connectivity of the amygdala and prefrontal cortex. (reviewed in Maski, 2013). This abnormal connectivity also exists in ASD. An fmri study in which sleep-deprived healthy adult participants were compared with those who had slept showed increased amygdala activation after viewing images that were emotionally adversive. (Yoo, 2007) In addition, the functional connectivity was stronger between the medialprefrontal cortex and the amygdala in the sleep control group, and the autonomic brainstem regions and the amygdala in the sleep deprived group.

15 Treatment of Insomnia: Behavioral Approaches Behavioral treatment of sleep problems in children with intellectual disabilities and challenging daytime behavior reduces parental stress, increases parents satisfaction with their own sleep, their child s sleep, and heightens their sense of control and ability to cope with their child s sleep (Wiggs L, 2001)

16 Components of Successful Sleep (for any child) Daytime habits Evening habits Sleep environment Bedtime routines Sleep Hygiene Sleep hygiene is a term used to describe a person s daytime and evening habits that contribute to successful sleep.

17 Measuring Sleep Hygiene The Family Inventory of Sleep Habits (FISH) We developed the FISH as a sleep habits questionnaire for children with ASD The FISH contains 12 questions that ask about sleep habits in the child and family Excellent test-retest reliability and external validity with the Children s Sleep Habits Questionnaire (CSHQ) Malow et al, Child Neurol, 2009

18 Sleep Needs (for any child) Amount of sleep Timing of Sleep Regularity of sleep (bedtime / waketime) Forbidden Zone

19 Time for bed Put on pajamas Use the bathroom Wash hands Brush teeth Get a drink Read a book Get in bed and go to sleep Line Drawings Checklist

20 Children with Limited Verbal Skills Schedules with photos Object schedules Cues in the environment

21 Sensory Strategies Rocking and Swinging Snuggling Massaging Listening to music Calming scents Chewing gum, vinyl tubing Clothing Bedding Weighted blankets Mattresses Bed tents Night lights White noise

22 Strategies for Sleep Resistance The Rocking Chair Method (parental presence with fading) Let your child fall asleep on his/her own but stay in the room, sitting in the rocking chair, with your back to your child Move the chair closer to the door each night until you are out of the door Rewards: Morning stickers or basket of presents.

23 The Bedtime Pass (P. Friman) Bedtime pass

24 Sample Story to Support Bedtime Pass People need sleep. Sleep helps people feel rested and have more energy. Sleep helps people stay calm during the day. Sleep helps people do better in school. My parents want to help me get a good night sleep. They want me to be rested, calm, and do well in school. My parents have made a bedtime pass to help me. They will give me the bedtime pass when I go to bed. The bedtime pass is like a ticket. If I need anything extra, I have to trade the bedtime pass. If I ask for a drink of water or get out of bed, I have to give my parent the bedtime pass. When I stay in bed all night, I get to keep the pass. This is a good thing! In the morning I can trade the bedtime pass for something really special. A good night sleep will help me be rested, feel better, and do well in school. My parents like it when I get a good night sleep.

25 Parent Sleep Education in Autism We carried out a two-phase study in parents of children with autism, ages 2-10 years with sleep onset delay of 30 minutes or greater on 3 or more nights/week. Phase 1: 36 parents were provided either a sleep education pamphlet or no intervention. (Adkins, Pediatrics, 2012) Phase 2: 80 parents were randomized to either two 2-hour sessions in a group setting or one 1-hour session in an individual setting with a trained sleep educator. (Malow, J. Autism and Dev. Disorders, 2013) Sleep and behavioral measures obtained at baseline and 1 month post-treatment. Sleep education curriculum: daytime and evening habits, sleep needs/timing, calming bedtime routine, saying goodnight to the ipad and other electronic devices, minimizing bedtime resistance, optimizing parent interactions with child at bedtime and upon awakening.

26 Parent Sleep Education in ASD: Results Sleep Latency (time to fall asleep, minutes) as measured by actigraphy, significantly improved in parents receiving sleep education (vs. pamphlet). Individual vs. group education did not differ (*both p values = ). Significant treatment improvements were also noted on: Children s Sleep Habits Questionnaire (insomnia domains) Repetitive Behavior Scale-Revised (restricted, stereotyped) Child Behavior Checklist (attention, anxiety) Pediatric Quality of Life Scale (total) Parenting Sense of Competence (efficacy, satisfaction) Future Directions: Develop and test novel models for delivering behavioral interventions Integrate behavioral interventions with pharmacological treatments Expand our work to adolescents and young adults

27 AS ATN Toolkits Autism Speaks, on line materials

28 Insomnia- Pharmacological Treatment Best used after behavioral treatments have been tried unsuccessfully, and in combination with behavioral therapies Whenever possible, choose a medication that will treat a comorbidity such as epilepsy, anxiety, or a mood disorder Start at low doses, especially in children with developmental disorders (less able to communicate adverse effects effectively) For primary insomnia, no FDA-approved drugs. We have reported success and minimal adverse effects with melatonin (Andersen, J Child Neurol, 2008; Malow, JADD, 2013) and gabapentin (Robinson, J Child Neurol, 2013). Other options clinicians use include alpha agonists (clonidine, guanfacine) mirtazapine, trazadone, zolpidem, and respiridone. None of these has been tested in definitive trials, and side effect profile is important.

29 Summary Sleep disturbance is common in children with ASD Sleep disturbance is also highly treatable Identification of sleep disorders in children can contribute to improved functioning in child and family Additional areas for research include how to best deliver behavioral sleep education and role of medications in sleep Thank you!